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I've Had It With The Hooey

It's been over 3 weeks since Micah was evaluated for an AAC device. I knew coming from that appointment that it would take a while to get an actual device into our hands, but I had no idea the extent that foot dragging could be drug out.

I spelled out what the system requires, and although it's all kinds of frustrating to have to jump through these hoops, I'm doing it because it needs to be done.

But here's the problem. We're stuck even trying to get to the first hoop, much less through it. Micah needs a loaner device to use before we can do much of anything. His therapist at school said she could try to track one down for us (since it's her job and all) but after 3 weeks she's come up blank. This week? She gave me the name of several places that I might try looking.

Um, if it's your job, why are you pandering it off on me?

But I'm done waiting. Done. So I took the names and called them, and I found a device on the second call. How hard was that? And why wasn't it done by the therapist weeks ago? But it wasn't all that easy apparently. I needed to call yet another agency who signs devices for our county. You know, the device that's sitting in his closet collecting dust. The one that I could drive over and pick up, leaving my credit card as collateral.

That phone call resulted in leaving messages for people who are sick and on vacation. (Yeh, two of them.) I called Mr. It's In My Closet back and said "now what? I want it. She's not in. She won't be returning my call and you know it." He left a message for them to call as well. How kind.

The next day I called back because as of 2:00 PM I'd heard squat. And she said, "Oh, sure, you can borrow the device! Go to this website, download this form, fill it out, send it back to us, and we'll process it." This translates directly into several more weeks before I make any kind of headway. And I can't download forms from my computer and don't know why.

I asked (quite stupidly, knowing that it would elevate my blood pressure) how quickly this would take. "Well, pretty quick once we get your application processed. Of course, that's if there's no waiting list for the device you want."

Stop the presses. There's a waiting list for something that's sitting around collecting dust? Does this tell you that you should be speeding paperwork through a little faster? Or maybe change the way things are done?

I wonder what would happen if I would just show up on Monday morning and stage a stand-in until I get that thing for my son. This is just so bureaucratic. And I'm just so over it.

I called the manufacturing company and explained, a tiny bit impatiently, that we were having difficulty finding a loaner device and asked how they could help me. I was given a phone number. *sigh* After calling, it turns out that I needed to talk to someone else who takes care of our county. Shocking, I know. She said she'd email him and have him call me. Wanna start taking bets now that this never happens?

I am this close to just calling Prentke Romich and placing an order myself. If I had $3600 sitting around, I would. Why on earth is this so stinkin' complicated?

Gawd. $3600 is a lot of money, and yet it's not. I could see having to wait months and months to work through the bureaucracy to get a $36,000 device, but something that is lacking that extra zero SHOULD not be this hard.

*sigh*

I feel for you. I wish I had the money lying around because I would absolutely help you out.

Oh I am sorry! How absolutely infuriating! Are there any parent advocates around where you are? I know we have a few around us.

Or maybe even do something crazy like try to just go to the top and contact the governor. I actually emailed the governor a few years ago about an issue my MIL's SIL had regarding her special needs son. Amazingly, I actually got an email and a phone call (not from the governor himself). I wrote a very detailed, very "professional" type email explaining her problems and her lack of response and they really jumped. I was amazed at how much attention my little letter got. So, why not? As long as you sound intelligent, reasonable and keep to the facts, they will only have respect for you. In fact, here is the link to contact him.

Can you email me the link? I'd try downloading it and emailing it back to you. And then, with it filled out, you show up Monday morning and wait. Seriously. Show up there. Don't think about it - just do it. Wait till the loaner is in your hot little paw.

Yep which is why we need the government to just take over our whole cotton picken lives. My new job is a lot of this crap and I don't know how much of this I can take, it stinks. Mayve money will fall out of heaven. Why not set up an account where all your bloggy buddies can give for this. Not to mention all your friends, your church etc. I'm serious. My mission trip was fully funded in one week. God has a plan for Micah. Post an address or a PO box or something. That's really not a lot of money.

You are a fantastic advocate. Fantastic! If they don't get that device to Micah soon, please consider contacting The Arc. My neighbor was stonewalled repeatedly by our local school. In absolute frustration, she contacted The Arc. After one brief meeting, The Arc's attorney sent a letter to the school simply reminding them of her son's rights. My friend's son had what he needed within the week. I just wonder if they couldn't speed that process up for you, too. I have no idea if it would help you or just add another hurdle to your process...

Don't you just want to scream!!? Max is going to be getting a different device (hopefully). His SLP is pushing for one. The principal is the type that wants it done -yesterday. She asked how much it cost, thinking she may just go ahead and buy the thing instead of waiting. Then heard the price and decided she better wait! I think the one the SLP is wanting is a lot like Micah's.

I also was going to suggest writing your governor or congressperson. Because this is ridiculous! These devices are to help people who need it. Why create processes that don't let the people who need it get it?

Contact someone to help fight on your behalf! Or even the media. They love a good Government Sucks story, right?

I hear you . . . I've lived it . . . I've prayed over it (over and over again) . . . and I've watched it get worse. We were blessed many times over with "gifts" from those who bristled at the the governmental Hoo-Haw!

I'm a couple days behind in my reading so I'm sure this is all taken care of, right? Oh well, wishful thinking. I hope you get it straightened out soon. Having worked in government, I know how many of those people can be. It always frustrated me.